Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, individuals can establish supportive relationships, share experiences and information, and sometimes simply vent.

BioNews Services, a leading online health, science, and research publication company, has been introducing its own forums, including one for pulmonary fibrosis (PF), a disease marked by scarring — or fibrosis — of lung tissues, making breathing difficult. Moderated by patients and caregivers — nearly all of them BioNews columnists — these forums complement the company’s news and information websites, such as Pulmonary Fibrosis News.

It’s that synergy of science and personal experience that sets BioNews’ forums apart.

“Patient forums are certainly not a new concept, but BioNews has something unique to offer our communities,” said Chris Comish, BioNews’ founder and CEO. “No other company has the ability to deliver such relevant content to our readers and use that as a starting point for driving conversation and discourse. We’ve had some really touching conversations occur, and have seen patients, particularly those newly diagnosed, find sources of hope and inspiration. It’s touched everyone involved.”

The company has introduced nine forums since January — PF was among the first — with more launching by year’s end. The plan is to have a forum, customized by moderators, for each of its 60-plus rare-disease sites. Every forum requires registration and moderator approval, and offers features such as private messaging and keyword search.

Clinical Trials is where members can learn which studies are recruiting patients, or where former or current trial participants can share their experiences. For instance, there’s a post about a global Phase 3 program consisting of two identically designed trials, ISABELA 1 (NCT03711162) and ISABELA 2 (NCT03733444), to evaluate the potential of novel IPF therapy candidate GLPG1690 (by Galapagos). The trials are currently enrolling.

To help generate conversation, moderators — at least two for each forum — regularly post topics within subforums. Sometimes the topic is based on a new column. Other times, it’s something about day-to-day life. Moderators also post about their own lives; for instance, sharing about movies they’ve seen or their vacation photos.

”There’s a lot of misinformation out there, so I feel like we remedy that a bit,” said Mark Koziol, who co-moderates the PF forum with Charlene Marshall. He was diagnosed with PF in 2014, followed the next year by a lung transplant.

“Some forum members come back and say, ‘Thank you.’ Maybe they got a suggestion that worked for them. It makes you feel good,” he said.

The forums’ framework was mostly developed by Kevin Schaefer, with help from the social media team at BioNews. Schaefer is the company’s community development manager and a spinal muscular atrophy (SMA) BioNews forum moderator. He’s excited about the forums, and their growth and potential.

“It’s just really cool to see a community evolving in each of them,” said Schaefer, who has SMA type 2. “They are as much about fostering community as they are about providing information. We want to do everything we can to engage with our members.”

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”

Disclaimer:

Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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